I"m in London
Your symptoms sound like a page out of my journal! I’m new to this community, and this is my first comment. My journey started with BPPV many, many years ago; however, a couple of years ago something changed. I felt a sense of being dizzy all the time (not the spinning type one gets with BPPV). Certain lights, loud sounds, crowds (especially restaurants), grocery stores, quick head movements, reading my iPad (eyes would jump), reading books… Living a daily nightmare. My head hurt all the time (especially my temples), face pain, ringing in my ears, hand tremor, and weirdly, uncontrolled teeth chattering; I thought I was losing my mind! Very long story short, I finally saw a top specialist at the University of Pittsburgh, Dr Furman, and was diagnosed (after 2 hours of testing), with Vestibular Migraine. This diagnosis had been made by other doctors I had seen as well-- I was searching for a miracle. Years ago (30 yrs), I was diagnosed with ocular migraines, which is linked to vestibular migraine, in that, a higher number of vestibular migraine patients also have a history of ocular migraine. I’ve done PT and chiropractic; PT has only proven helpful for BPPV. I’ve tried numerous medications (too many to list), but like you, am super sensitive and found side effects overwhelming. The first drug I tolerated was Nortriptyline; sadly it gave me heart palpitations, and I had to stop it. I then started a very low dose Klonopin, which I’m tolerating, but hasn’t fully resolved the symptoms, but my hand tremor is almost completely gone, teeth chattering way down, facial pain pretty much gone. Two days ago, my neurologist (who assured me, I’m not crazy, nor am I alone), started me on low dose of time released Verapamil. I’m having trouble sleeping with crazy dreams, and trouble waking. I saw someone post that taking it earlier in the night, rather than just before bed, was helpful. I can’t say yet whether it’s working, but I do have the feeling it may be-- I need more time, if I can tolerate the drug.
Sorry for the long post! I think I could write a book; I was so happy to find others who are dealing with vestibular migraine or migraine associated vertigo (MAV).
Hi there! I’m sorry you’ve had to deal with this for so long. This condition is definitely frustrating and overwhelming. I’ve had it for only two months and it has felt like an eternity. I’ll definitely have a talk with my neurologist to see what would be a good medication for me. I’ve read about some preventatives having more side effects than others, so I want to make sure I start with something I can tolerate. I hope the Verapamil works for you! I can only imagine how frustrating it must be for you to have tried so many medications. And know you’re not alone in this. I too feel like I’m going crazy at times but it’s reassuring to know that other people going through this say it’s a normal part of the coping process.
Hi there. Well two years ago I felt just like you do. It’s so horrible. In fact I’d forgotten some of it until I read your post!
So I’m much better now thanks to the diet, lifestyle changes and nortriptyline. I also take some supplements. How much each thing helped is hard to say but I wouldn’t be where I am without the nortriptyline, of that I’m sure. I’m not someone who takes medication readily but I would have done anything my doctor said as I felt so horrendous.
It wasn’t plain sailing with the nort. It did take some getting used to as the side effects did hit me hard to begin with. I just pushed on with it though and that stops.
Now I’m pretty much fine. If I overdo things I get horribly tired but the symptoms you describe are long gone. I’m just about to start weaning off the medication and when I’m off it ill start reintroducing the food. Hopefully that’ll all go ok.
Basically what I’m trying to say is that there’s light at the end of the tunnel and don’t be put off from trying medication. You won’t be on it forever and it helps so much. Best of luck with it all.
I am with you too! I came onto this site a TOTAL disaster about 2 months ago. And turnitaround and others were my lifeline. I had it strike me almost the same way as you, but over a week I just got worse and worse, no matter what I did. I felt like I was walking on a boat, or a dock, or even at one point a giant bouncy ball that might go out from under me at any moment. Couldn’t handle light or noise or travel. I stopped being able to drive, stopped being able to take walks. It was awful. Even on the diet, and trying all the supplements. The main triggers for me then were the computer, the phone and biggest one: STRESS. I too am very very sensitive to drugs. I tried Topamax and couldn’t tolerate it. But I was desperate. And couldn’t get in to see a specialist for 3 weeks as I deteriorated.
Thankfully, I finally got to see Steven Rauch (ENT Mass Eye and Ear) and he was so helpful. He also mentioned this site. He wanted me to go without meds at first but I insisted. So I went on 37.5 Effexor and it has helped A LOT, centimeter by centimeter. Also reading two books: Migraine Brain and Heal Your Headache. Read them. You will feel better! Effexor helps with the anxiety and stress a lot. And helps me sleep. Sleep is so so important. So is being hydrated and getting exercise. Exercise is tough because of the wooziness but try and get someone to walk with you if you need to. I have been walked like a dog at times.
And meditation is also good for the stress.
Good luck! I am driving again and walking a lot. Though I can’t drive far and can’t look at GPS and drive.
Thanks turnitaround and Sharon and everyone else who weighed in!
Two other things: magnesium has been really helpful. And BTW, I lost 20 lbs in those 2 months! I am now accidentally at a healthy weight. Not sure how the Nort works with weight but I was glad that the Effexor wasn’t a drug with weight gain. I had tended towards high blood pressure when I get a little overweight so this strange condition helped me bring my BP down. That’s the only positive.
Thank you all SO much for your responses! You have no idea how comforting it is to hear from people that have gone through this and can give me reassuring advise. This has been one of the hardest things I’ve been through because of how life-altering it has been, but I push through every day and I’m determined to get better. Thank you all again!
I have had everything you listed! You are definitely not alone! Let me know how things go and what they decide to do for you.
Your symptoms are exactly what I have. In looking for a cause for these symptoms a benign brain tumor was found. It is located in an area ( I can’t remember exactly right now-- brain fog) that could cause dizziness. After many doctors offered options on how to help me ( none worked) I decided to do radiation 30 times to shrink the tumor. After several months I felt great, but that only lasted for 5-6 months and I was back to dizzy 24/7. I live in Houston and went to many doctors in the Houston Medical Center. I completed balance/ dizzy testing 2 times, saw maybe 5 neurologist and a the Houston Methodist headache clinic. One neurologist suggested this could be MAV, but when I went to the headache clinic he said he didn’t think it was since we tried a few meds that didn’t work. Through desperation I found Dr. Hain and had a phone consultation. He said he thought it could be a combo of the tumor and MAV, but there is no way to be sure. He tried a couple of meds that did not work, but finally Effexor 37.5 daily and betahistine 16mg 3x day. I gradually went down 1 x per day of betahistine. I felt great for 5.5 years. Last month the symptoms came back 24/7. I tried increasing betahistine again, but that has not helped. I am going to Chicago in February since Hain no longer does phone consults. I have an MRI tonight to see what the tumor is looking like. I had some migraines, but really did not experience many but I have had several in the past month. I can’t get them to go away. Suggestions/ insights would be great. This is my first time to post.